a rabble-rouser

Category: kindness

An essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access. Hurrah! (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014). But here it is. It is free for the reading.

I share this story widely in my work with health professionals. It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

I read the essay A Moral Bucket Listby David Brooks in the New York Times last week. I shouted YES after I finished reading it. I might have even pumped my fist in the air. This one is a keeper, and I officially will add it to my Gospel of Really Good Writing That Tells The Truth.

There are so many gold nuggets of phrases and ideas in this piece that you should just go read it yourself. Brooks talks about collecting virtues that you’d want mentioned in your eulogy, like being brave, honest and faithful. He says that suffering introduces you to yourself and reminds you that you are not the person you thought you were. And this: ‘…and at moments of rare joy…the ego rests.’

If you’ve never been humbled in your life, don’t bother reading this because it will make absolutely no sense to you at all.

Yesterday, a scrabbly-looking old man came up to me in Langley asking for directions. Now I’ve been to Langley like twice in my entire life, so I’m hardly a local. But I knew that he had just asked some other people to help him, and they had turned him away. So he and I stood and looked at the address on the envelope he was holding. I punched the numbers into the map app on my phone. I asked him if he was walking or driving. Walking, he said. We figured out the address was a six minute walk, and I pointed the way, citing landmarks. He was so relieved I helped him. It took all of four minutes of my time. Afterward this simple task, I felt as if I had contributed some material towards my eulogy.

But before my head gets too big, I also like to remind myself how I have fallen.

I try to be kind, but if people piss me off, I’m not kind at all. I do not feel kind towards my husband’s ex-wife or certain politicians, for instance. I also feel no kindness towards the psychologist who wants to administer an IQ test to my kid with Down syndrome. (In fact, part of my demonstration of unkindness is mentioning these people in this piece). See what I mean? If you wrong me, I will also write about you. That’s not a very nice thing to do.

I’ve also yelled at my kids, especially my older ones. I made some bad dating decisions when I was a single mom. I’m flawed in my relationship with food. I try to be brave, but am a bundle of anxiety before speaking engagements. I like nice hotels a bit too much. My ego gets in the way when I want to shout: DO YOU KNOW WHERE I HAVE BEEN PUBLISHED? (That’s terrible, I know. I’ve never actually said that out loud, but I’ve thought it a few times). I check my Facebook, Instagram and Twitter feeds for notifications too often.

I think David Brooks would say this is all ok because I realize my limitations and I work to overcome them. I am so very passionate about love, kindness and compassion in health care that I do not even bother to contain this passion, and I have turned into one of those lucky people who does what she loves for a living. I hope this drives me towards the good, if I can keep my damn ego and that voice that administers negative self-talk out of the way. I feel extremely lucky most of the time, and sometimes I even feel blessed.

I’m going to keep aspiring to be a ‘stumbler.’ If we are lurching through life unbalanced, that means we have dropped all notion of even attempting to be perfect or normal. (Both of which do not exist by the way). I’ve significantly pushed off my pedestal twice: once when my first marriage split up, and another when my youngest kid was born with a disability. And then I’ve been pushed off so many times since that I don’t even bother crawling back up there anymore.

I’ve also had glimpses into those beautiful moments of true joy, where I realized that life is not in black and white – it exists in a stunning rainbow of colour. These moments only come when we open our hearts to everybody, including ourselves.

You see, there is an invisible current of life, just below the surface. If you are quiet and humble and good, you will soon discover that secret place – that’s where all the magic lives.

(This gorgeous canvas was gifted to my gentle daughter, who is going into nursing school this fall).

Six years ago, near the beginning of my career in the world of patient and family centred care, I was at a Family Centred Care Conference hosted by a pediatric hospital. I was in a session that was facilitated by the wonderful Peter Rosenbaum. He broke us into small groups, and asked the question: Family Centred care is…. Each group had to fill in the blank.

One nurse stood up and said, rather angrily, I don’t have time for family centred care. I was sitting at a group of family representatives. We all audibly gasped. No time to introduce yourself? No time to smile? No time to make eye contact? Family centred care is all those small gestures that mean a lot to patients and families. It is these small demonstrations by health professionals that show us that you care.

However.

One element of family centred care that does takes time is listening. Making space for people. Listening with your whole self. Minimizing distractions. Not rushing or appearing rushed. And yes, sometimes you can effectively listen to what patients need in thirty seconds. But many times listening means slowing down, pulling up a chair and sitting down for a while.

Alas, our health system does not compensate for this types of kindness or compassion. Our Canadian system is either based on fee-for-service (see as many patients as possible) or it is driven by the need for efficiencies. I’ve always been wary of philosophies in health care that are modelled after processes in car factories. For human beings are not cars. An interaction with another human being includes taking the time to get to know each other. This is the only way to create a relationship that is built on mutual trust.

Dhruv Khullar wrote a poignant essay in the New York Times earlier this month called The Importance of Sitting with Patients. In it, he laments a system that is so focused on the ‘altar of efficiency’ that it forgets the importance of sitting with patients. Should hospitals really be run like businesses? Does the race for efficiency sacrifice empathy? I concur with Dr. Khullar and say yes, in its current form, it does.

But here’s what I think. Visionary health leaders can add measures for compassion in performance reviews, hire based on both heart and brains, share patient stories at committee meetings (or even better, invite patient reps to committee meetings), and celebrate acts of kindness in their hospitals. If they can somehow figure out a way to compensate for listening, well then empathy can indeed function alongside efficiencies.

I read an unattributed quote on Twitter, and I think it is brilliant: health care should be less about the care, and more about caring for people. Less about services, more about serving people. And caring and serving does take time. Having worked in health settings for the past six years, I now feel for that nurse who stood up at that conference and said she didn’t have enough time to practice family centred care. Because the health system has slowly but surely stamped out her passion for caring for people.

As Dr. Khullar says, there is tremendous value in having more time to spend with patients. Let’s continue to build our own altar of empathy. Six years later, I believe now, more than ever, that love always wins. I know that it is the gentle people, like my own daughter Ella, who are going to change the world.

I have a soft spot for pharmacists. There, I said it. They are one of only a handful of health professions who actively recognize the value of the patient voice. They have not forgotten that patients are the people that they are working to serve. Pharmacists organize conferences and invite patients to share their experiences. That’s pretty profound, and I think they are true visionaries. (Talking amongst yourselves all the time doesn’t make for a revolution in the health system, folks).

I just had the great honour of co-presenting with Allison Wells, who is a fabulous mom and pharmacist at the Canadian Society of Hospital Pharmacists in Banff. Allison did an exemplary job of sharing the story of her son’s adverse drug reaction in a hospital setting. She eloquently gave pointers to the pharmacist audience, and stressed that they had to use their own voices to speak up to ‘stop the line’ when errors are made. I was so impressed with her passion to share her son’s experience in order to make change in the health world.

Dr. Peter Zed before her gave some pretty terrifying statistics about patients presenting to hospital with adverse drug reactions, experiencing adverse drug reactions while in the hospital, and also after discharge. It made me want to stay as far away from the hospital as possible. But it was also heartening to know that pharmacists are looking at the issue of errors with great seriousness and transparency, and that they make a huge difference in making sure that the hospital makes people better, not sicker.

My take-away from Dr. Zed’s talk was this – he showed research from Hong Kong that said that patients adhere to treatment plans better if they receive follow up care from pharmacists. And I might be stretching this a bit, but what I heard is this: patients will care for themselves if they themselves feel cared for.

And as far as my presentation, which followed Allison’s? My talk was about this:

I know in my heart that pharmacists get this. The standing ovation Allison and I received afterwards was proof. (My first one ever, wow).

This was an awesome, engaged audience of health professionals, with big brains and even bigger hearts. Bravo to my noble pharmacist friends – carry on doing the good work that you do.

Having empathy is not enough. Feeling for another person doesn’t mean much – unless you show – somehow in your words and behaviour – that your heart is open to another person and their experience.

Lauren Casper’s essay, When someone saw more to the storyreminded me of this. That young lady that gave Lauren flowers will never even how that simple kindness meant the world to her. It never takes much – only the courage to extend out and connect with another human being.

It reminded me of all the simple kindnesses that have been demonstrated to me as a mother over the years. I distinctly and fondly recall all the people told me that my baby with Down syndrome was beautiful. I also choose to remember all the knowing smiles in the mall (not the people who look away when they see my son). Let love win.

For health professionals: Nobody knows how much you care about your patients unless you demonstrate it through your words and your actions – a touch on the shoulder, a hug, holding someone’s hand. An added bonus for health: people who feel cared for will care for themselves.

For parents: Your kids don’t know you love them unless you tell them and show them. And you don’t withdraw your love because your kid is making choices that you don’t approve of. I’ve sadly seen parents do this over and over again, especially with their young adult children. The same goes for spouses and partners. You cannot assume someone knows that you love them, even if you’ve been together for a very long time. (That’s my plug for my husband to bring me flowers).

When you see a mom with little kids struggling in the grocery store, thinking to yourself, ‘oh man, I’ve been there’ isn’t enough. Make eye contact with her and smile. Ask if you can give her a hand. If she says no, that’s ok – you’ve demonstrated that you care in a non-judgmental way. I’m famous for letting moms of young children in front of me in line at the grocery store. In fact, I let anyone with a small order in line in front of me, as my grocery cart is usually filled to the brim. People are shocked when I invite them to bump me in line, and it such an easy gesture. It costs me nothing.

What if you told a mom friend who is floundering that she’s doing an awesome job and you know she loves her kids so much? What if you allowed yourself to be vulnerable and admit that you, too, have yelled at your kids, and locked yourself in the bathroom to get away from them?

When my eldest moved away to LA in the fall, the one thing I was desperate to know from him was this: do you know that you are loved? And he said yes. As Raymond Carver says, we want to feel beloved in the world – but we won’t feel this way unless people tell us AND show us.

One Saturday night, my husband and I were downtown with two dear friends. We attended a foodie event, stopped for a glass of wine at a lounge, and were heading back to our friend’s car. We were walking down our main street, Jasper Avenue, and it was about 10 pm. It was dark and getting chilly. The sidewalk was filling with loud and rowdy revelers. I was happy we were heading to a quieter part of town.

An old lady walked quickly past us as we were piling into the car. We all turned and watched her, as she was quite elderly and did not have a coat on. She lurched to a stop at the traffic light, and waiting for the light to turn green. My radar perked up, but I was in a jolly mood, and looking forward to our next destination, so I settled into the car.

Suddenly, our friend John said sharply, “Someone should go help that lady.”

We all looked at each other. I was the only female in the vehicle. We figured I’d be the least threatening person to approach her. I was voted out of the car. I walked to catch up to her, and the light turned green. She was walking FAST. I half ran to catch up to her. I didn’t know what to say.

I put my hand on her arm. I said, “hello, are you out for a walk somewhere?” Her arm was paper-thin and freezing cold. I noticed that she had no socks on.

She looked at me closely with her light blue eyes. “I’m going north of St. Albert,” she said. “I’m going home.”

Now St. Albert is a suburb of our city and many kilometres away. She was also heading east, not north – entirely in the wrong direction. I knew then that John’s instincts were correct. This old lady was lost, and confused.

I wasn’t sure what to do. A young lady came up and was softly speaking to her too. My friends had inched up with their car. I wanted to get her warm, and get her off the mean streets. I asked if she would come with us and we could take her somewhere safe. She hesitated for a moment, but thankfully she agreed to get in.

John was our driver. He spoke to this cold, lost lady so gently and with such great kindness. It was as if he was talking to his grandmother. He found out her name, and he kept using it as he chatted with her, keeping her occupied and calm.

“I got confused when it got dark. It got dark so fast,” she whispered. This was true. She was steps from our vast river valley, which is deserted and would have swallowed her up whole. I was thankful for the warmth of the car.

She kept repeating a street address to us. She had no purse or ID. Should we drive there? we thought. No, she didn’t know the day of the week. I’m sure that address was a home address from a very long time ago.

We decided to drive a few blocks to the central police station. I got out to explain our situation, but oddly, the station was pitch dark and all locked up. There is no public counter on Saturday nights – having watched a lot of Hill Street Blues and Law & Order, I found this really strange. I had to call 9-1-1.

A police officer arrived immediately. We waited for another car, as he had a vomiting drunk gentleman in the back of his car. (Police officers! What a job).

When the other car arrived, the officers said they’d been looking for this lady all day. She was an official missing person. She’d been reported missing from a local hospital many blocks away. She’d been wandering the streets for over eight hours. Cold, lost and hungry.

She seemed wary of the police car. “You aren’t in any trouble,” I assured her. She gave me a big hug before she disappeared into their car. “Thank you, dear,” she said. And then she was gone.

Now, I’m not telling this Good Samaritan story for any accolades. To be truthful, I saw this lady on the sidewalk and dismissed her because she was waiting patiently at the light, and walking so briskly. But our friend John is the real hero. He insisted that we help her out. So that’s what we did.

I’m haunted by the coldness of her arm. How long before she wandered down by the river, or got disorientated in the remote river valley trails? How many people passed her on her during her eight hours on the street? And why, oh why, didn’t anybody help to stop her?

Reflecting back on that night, I wonder why we have such reluctance to help a stranger. Is this an urban, city thing? Are we so busy that we think we don’t have time to help? Do we think that this isn’t our problem? I have renewed respect for the young police officers who were searching for this lovely old lady all day and finally brought her back to safety. I hope she’s finally found her way back home.

Last summer, I wrote about social exclusion from a mom’s point of view in a piece called The Invisible Mom. It was originally published on the Bloom blog and then picked up by Huffington Post and Seleni Institute. It still gets retweeted on occasion. I know that the topic really hit a nerve.

Liz Lewis, an anthropologist, writer and sister of a woman with a disability, published In the Community, but Aloneon the Bloom blog today. I’m still in my pajamas and nursing a cold cup of coffee, but her essay made me outraged. Not because I disagreed with her sentiment, in fact the opposite: I was outraged at a society who continues to happily exclude people with disabilities in their world. Our loved ones are ‘allowed’ to go to community schools, or live in the community, but are they actually embraced by the community as one of their own? In Liz’s sister’s and my son’s experience, the answer is no, no, no.

What the Invisible Mom was about was about having an Invisible Child. True, my son’s disability is also manifested in a physical way – you can look at him and know he is different. So he gets stared at a lot (which I’ve learned to tune out over the years), but is he welcomed and included in the community? No, he’s not. My husband tells me that it is tribal: that people fear people who are different. But it is 2014! We have committed to inclusive education so that he IS included – and that to me doesn’t just mean the school tolerates having him sit in the classroom. Inclusion includes social inclusion, but here’s the stark reality: while the teachers do their best to ensure he’s included in all activities, including recess and gym class, the sad fact is that the other children do not include him socially, in a meaningful way. Number of birthday party or playdate invitations from school? Zero. As an assistant principal said to me: we cannot force kids to be friends with your son.

I think we need to turn this issue upside down. I’m tired of being told to be the super fun mom so kids want to come over to our place and be friends with Aaron. (Um, which hasn’t worked lately anyhow). I’m tired of hissing at Aaron to ‘behave’ and ‘not to be weird’ when we are in public, for fear of the stares and judgement.

How about we stop using the word ‘society’ and start saying you.

How about you, parents of typical children, work hard to teach your children not to be afraid of all of those with differences? How about when you talk about diversity, you include children with disabilities in your formula? Why is it up to us to always beg and plead for you to remember our child when you are crafting birthday invitations? Why is this my responsibility and not yours? Do we all not want to teach our own children to contribute to a kind, welcoming and diverse world?

Change is never going to happen unless we start talking about these issues honestly. Thank you, Liz Lewis, for introducing the important topic of social exclusion in a reasoned and rationale way. I hope that it hits the mainstream, because that’s where these hard conversations need to happen….

EDITED TO ADD:My husband constructively suggested that this post was mostly venting and contained no practical advice. What’s the solution to the issue of social exclusion? I’ve thought about that, too!

Here are some tips and hints about talking to kids in the classroom about a child with Down syndrome (or any other difference): The Down Syndrome Talk.And for families teaching their children about diversity and differences? How to Become Part of Aaron’s Village. It starts as simply as smiling and saying hello.